Yvonne begins by recounting the hopes of those attending, and ends with her own dream that this, by breaking the silence, will be just the start. “Part of achieving this level of widespread acceptance must include training for all frontline professionals about the issue, and why it happens and how they can help. Ideally, I’d like to see a future where professionals and parents work together in a spirit collaborative respect to find individual support and solutions that work for each child.” There are some salutary lessons for professionals in her post. Please do read it and understand that this is the real experience of many parents, while we always acknowledge that there are also informed, compassionate practitioners already out there who do truly “get it”.

What did parents want?

Just before the recent conference about violent challenging behaviour (VCB) in special needs children, I emailed the parents who were due to attend to ask them what they most wanted from the day itself. These are, without exception, parents who are being pushed to their very limits, coping with frightening and dangerous situations every day, and dealing with painful and traumatic injuries being inflicted on a regular basis by the children they love more than anything else in the world. Reading their replies was humbling, particularly when I realised that most of them wanted, more than anything else, was the chance to simply spend time with other people in the same situation so that they would be believed, understood, accepted and not judged for the first time ever.

To be understood and accepted

That’s what we all want, deep down, to be with people who inherently understand us and to feel validated and valued for who we are and what we have experienced. It’s really not a lot to ask for, especially considering how extremely difficult life is for this group of parents. Yet almost without exception, they were able to recall times when they had tried to explain their circumstances to others, and they were made to feel judged, blamed, belittled and shamefully inadequate as parents.

Loneliness

Loneliness was another issue that many parents talked about in their replies. Loneliness doesn’t just imply being physically alone, on the contrary some of the parents were surrounded by people in their everyday lives. However, nobody in their circle truly understood and believed in them and in their child and they were lonely in the way that only other people’s attitudes can make someone feel entirely alone and isolated.

To help our children

The second most common wish for the day was that they were hoping to learn new strategies and ideas that they could use to help their children cope better with their frustrations, and that might be able to reduce the level of violence their children are using as a way of communicating. Linked to this were several comments about wanting to understand why these behaviours occur, and how to prevent them or to de-escalate them when they happen. They wanted information, support, signposting and advice.

Information – it’s not a lot to ask for

Again, it’s not a lot to ask. Their children have a diagnosed disability such as a learning disability or autism, and this behaviour is a well-documented potential symptom of these diagnoses. There is a lot of information about how these behaviours can be more successfully managed or even re-directed, yet finding that information and piecing it together can be nigh on impossible. There are specialist behavioural support teams who can work with families to help their children. Yet the vast majority of parents can’t access these teams easily, and even those who do manage to get specialist support often have had to wait years to be taken seriously enough for a referral to be made.

Avoiding injuries

Avoiding injuries was another big issue, and that included how to prevent the child from self-harming as well as protecting their brothers and sisters from injury during these behaviour episodes.

Practical tips

When a child has developed patterns of challenging behaviour than can be violent, the dynamics of the family shift so that it can feel as though the child themselves is in control of the household with everyone else walking on eggshells doing all that they can to keep them happy and settled. Parents recognise this, and wanted practical tips on how to re-establish firm boundaries in these sorts of situations, and to take back the control of the family.

Fear of the future

There was another theme running strongly through the replies from parents, the fear of the future. What happens when their children get bigger and stronger if no one has helped them to re-direct their violent behaviour? Parents are desperate to know what they can do now to help their children reach their full potential and to find different ways to channel their frustrations. The biggest fear among parents is that their children, once they reach adulthood, may end up in prison or locked away in a long-stay mental health unit.

Professional Help

How to access professional help was another huge issue. Help that should be immediately available to these families, some of the most vulnerable in the country. Instead, shockingly, one parent after another recounted their experiences of being disbelieved, blamed, dismissed and abandoned by the very services supposedly put in place to support families most in need.

Lack of training among Professionals

Staff in schools, in Local Authorities, Social Services and Health Care Centres have no training in violent challenging behaviour(*), so they have no understanding that it’s an issue at all. When a parent asks for help, more often than not it is so far outside a staff member’s own lived experience that they simply don’t know what to do, how to react, or how to help.

Parent Blaming

Instead, many families are blamed for their child’s behaviour, and it is very common that parents end up facing child protection proceedings instead of getting the help for their child that is so badly needed.

There were several parents at the conference whose children, sometimes including the brothers and sisters, had been forcibly removed from their home and placed in the care system. All because the professionals involved with the families had wrongly made an assumption that the parents were somehow to blame for their child’s special-needs driven behaviour patterns.

Conference Day – like meeting old friends

Bright and early on our Conference Saturday, parents started arriving at the venue. We’d exchanged so many emails by that stage that they felt like old friends, and the welcoming hugs I had were amazing. The parents were pretty amazing too. They have been knocked back so many times, they have so many odds stacked against them, yet they were strong, resilient, funny, warm, brave and compassionate men and women, finding the strength to carry on and fight the system every day, then getting up the following morning to do it all over again.

Our Awesome Speakers

Our speakers were pretty awesome too. Kath Evans, Hazel Watson and Oliver Shanley from NHS England, Jim Blair from Great Ormond Street Hospital, Cecilia Anim, who is the President of the Royal College of Nursing, Mark Brown who is a leading Autism Specialist, Mary Aspinall-Miles who is a Barrister, Dr Girish Vaidya who came all the way from Sheffield where he is a Consultant Child and Adolescent Psychiatrist who works with particularly troubled young people, and Malcolm Cooper, a Stress-Management and Relaxation Specialist.

Jaydn – a real star who has turned his behaviour around

We also had a very special contribution from Jaydn, a 13-year-old friend of mine who presented remotely about his own experiences as a child with special needs who used to frequently use violence towards his mum to express his own distress. Jaydn is one of the lucky ones. He has had intensive specialist help to move him on from these behaviours, and he is now facing a much more optimistic future than anyone would have dared hope for a couple of years ago.

Thanks …

I had the best team ever around me supporting everyone on the day. Dan, Linda, Sian, Rachel, Francesca, Adam, Malcolm and Geraldine. Every one of them from families who have also coped with the same sorts of issues that the day was all about. Grainne and Nikki too – although they couldn’t be there on the day, kept me going in the weeks beforehand with their common-sense advice and thoughtful suggestions. Gareth Presch, the Founder of The World Health Innovation Summit (WHIS) came all the way from Carlisle to join us too. His support is invaluable, and working with communities of people to improve health and well-being is exactly what WHIS is all about. I would also like to thank Gill Phillips of Whose Shoes and NHS England for their generous sponsorship which made the day possible and go as smoothly as it did. Gill believed in me from the moment I ran the idea past her, and immediately offered to help. I’d also like to thank Ruth Evans of Patient Experience Network, who partnered with me and who was on the end of the phone throughout the planning with lots of ideas and advice. Thanks too to Graham at the Garden Catering Company who provided a wonderful lunch with a very thoughtful discount, and to Sheila, who manages The St James The Less Centre in Pimlico and who worked really hard in the background to help to make the day a success.

Breaking the silence

It was only a day, there were only 60 families represented in the room, and the scale of the problem is so vast that we couldn’t hope to solve everything in seven short hours. However, we made a very good start.

It was a simply wonderful day, full of hope, kindness and acceptance. People talked, people listened, parents were heard, validated, believed and embraced. There were an awful lot of hugs too! (At the bottom of Yvonne’s original post you can see what people said themselves about the day.)

Only the start

This is only the beginning. We have to capture the energy that was in the room that day and build on it until this devastatingly tragic issue is given the focus that it needs. The first thing we have to do is to break the silence, and make it OK to talk about how our vulnerable children lash out, with an expectation that other people will extend compassion instead of judgement.

Training

Part of achieving this level of widespread acceptance must include training for all frontline professionals about the issue, and why it happens and how they can help. Ideally, I’d like to see a future where professionals and parents work together in a spirit collaborative respect to find individual support and solutions that work for each child.

Building a resource hub

Then there is the issue of making all the information on this easily available and accessible for parents. I’m going to make a start on doing that – collecting what I can find, putting links to it on my website, and creating new material to fill any gaps.

What I want to see

I want a future where every parent is told that violent challenging behaviour may develop in their child later on at the same time they are told about their child’s initial diagnosis. I’d like them to be given basic information about what they can do to minimise any distress in their child before such behaviours develop. I’d love them to have a good understanding of what to do if these behaviours start, and that there will be a pathway of good, strong, compassionate care and support to help their child manage their emotions in a more positive way before the patterns have a chance to take hold and become embedded.

Yes, it may cost money, but nowhere near as much money as doing nothing costs, which leads to thousands of children heading towards prison or mental health units for years upon years.

Toby

Why is this so important to me? Because for 10 years we were one of these families too. Toby, my adorable, hilarious, sociable, warm and kind son who is also non-verbal, autistic and with a severe learning disability had frighteningly violent episodes at home. He, just like Jaydn, got the help he so badly needed, and we have all learnt together how to manage his anxieties, sensory issues, communication difficulties and transition issues in a way that he finds life much easier to cope with now.

All Behaviour is a form of Communication

All behaviour is a form of communication. When a child behaves in a certain way, they are trying to tell us something. When a society behaves in a certain way, it also communicates very strongly too. Together, we can choose to behave with kindness and acceptance, or judgement and blame in the way we either support these families or continue to shun them. What happens next is up to all of us.

I’m developing half day Workshops and full-day training on Violent Challenging Behavior in Special Needs Children for professionals and for parents. Please email me for more information – yvonne@yvonnenewbold.com

Yvonne Newbold is:

the WHIS Ambassador for Learning Disability, Autism and Families

The Patient Experience Network National Award for Outstanding Contribution in Patient Experience 2016

LDT Learning Disability Champion 2015

HSJ Award – Top 50 Inspirational Women in Healthcare 2014

Author of “The Special Parent’s Handbook”, an Amazon #1 Best Seller

* I understand that there is training available on working with challenging and violent behaviour but it is possible that not all schools or staff are able to access it.

4 responses to “Breaking the Silence on Violent Challenging Behaviour: a conference review”

This sounds like an amazing conference but this was not ‘breaking the silence’ – when surely the problems have been appreciated for years?

Perhaps the scale of the issues are coming more to light but these problems were certainly tmade evident in the Selwyn report (2014) where researchers were astounded to find that children diagnosed with conditions such as autism were not considered to have any disabilities by social care professionals. My adopted son has been on DLA/ PIP since 2007 – but not one of the multitude of assessments conducted by, or for, the local authority describes him as disabled. I have no explanation for this. It is something that is beyond my comprehension. We have never even met anyone from the disabilities team.

Child protection social workers are not the right professionals to be supporting families in these cases – and the struggle to achieve support from local authorities is a familiar one for many parents of children with disabilities and additional needs – whether their children are adopted or not. There are cases of birth children with autism being removed from their single mothers that have shocked the local community and frightened other parents away from even talking to services. Our case has put many off adoption – which was not what I wanted to see at all. Despite everything it is the best thing I have ever done – but it is not for the faint hearted.

In my view the following needs to happen:

1. The underlying causes of the shocking and appalling blaming of loving parents striving to do their best in the most difficult of circumstances need to be swiftly dealt with by legislative, policy and infrastructure change.

2. Compensation should be considered for parents that were wrongfully discredited and children that suffered corporate trauma as a consequence of parental help seeking.

It is a terrible terrible thing to be blamed for posing a threat to, or potentially harming a child, and personally criticised instead, of supported when one seeks help. To watch your dear child absolutely terrified as he is arrested and taken away against his wishes by the police, whilst you are viewed as the ‘problem’ and errors are made – after you have sought help for years – and could not expedite risk assessment. The consequences can be immense – all benefits were stopped immediately I reported when I was a carer wholly reliant on these. I am lucky I managed to get a job in a shop as the incident that led to the removal happened just before Xmas – or I might have lost the family home. As it was professionals could not meet until mid January so you can imagine what that Xmas was like for us. We made the best of it but it was awful.These are not the memories I wanted to give my child when I adopted him.

One stands to lose one’s job, career and home by reporting to poorly trained professionals without the necessary knowledge.

The impact on siblings and other family members can also be devastating. My mother died of a heart attack not long after care proceedings were instigated against me with totally unfounded allegations of mental illness and substance abuse on my part, which I was told is “standard”. These should not be standard and no one should be able to make such allegations without convincing and substantial evidence or foundation. Disagreement with a professional and a refusal to accept erroneous assessments is not evidence of an undiagnosed personality disorder!

Asking for help should not be a double edged sword and whilst a temporary or permanent separation may be needed, no parent should fear a distressing removal of their child, and fear facing court proceedings where one is treated as an adversary – by those responsible for providing support, when reporting VCB. And discussions of VCB surely must include self harm. This can be the other side of the same problem – when a child’s frustration and anger are turned inwards. This is so hard for a parent to deal with and professionals that see a lot of it can be rather blasé – when one becomes upset about it and about the way it is being dealt with and the lack of support and positive action, the tables can so easily be turned and the blame is put on you – in a court of law – where professionals and experts are believed and have access to legal advice help. These powerful organisations know exactly how to break up a family – but they don’t know how to deal with complex issues of parents being at risk from their children. The system is not set up for this. It is set up to uncover child abuse and neglect.

Systemic change is urgently needed.

3. There must be appropriate experts involved from the outset where ever VCB is an issue – to protect the families and parents from the blame they may be confronted with.

This must all happen NOW. To make local authorities that are responsible take action. It is they who must fund the experts and train their staff. Help them learn that blaming parents can be seriously harmful for all involved with devastating consequences and broken trust.

Continuing in the way we are now, with the current legislation and policy infrastructure, and with the blaming of struggling parents and knowledge gaps amongst professionals and agencies responsible, as this conference has so poignantly illustrated, is not an option for a civilised society – especially where adoption is a cornerstone of the government’s social policy.

When a committed adopter asks for help and it is not given, and the parent is blamed and denigrated, and their child is removed by professionals instead of helping, against both their wishes, whilst risks are exaggerated – this is a cruel and exploitative scenario, where human rights are violated, and it must be stopped.

Sorry to go on about adoption so much! I realise this affects many other families and the 3 measures I have suggested will help them too.

The systemic failings that lead to parental blame when help is sought for VCB issues are largely organisational and political. The blame will continue until there is legislative change – as there is no incentive or reason to do things differently. It is Kafkaesque that parents must battle and battle to achieve understanding and support for their children’s needs, and for the difficulties that the family must deal with, but when things go really wrong, because of negligence and failure to take positive action, vast amounts of ££ are miraculously and instantaneously available for legal departments and legal expenses. The blaming and discrediting gets quite surreal in these cases. It turns out, in such cases, parents are considered expendable by those with a duty of care, and some more expendable than others. Adoptive parents and single mothers seem particularly vulnerable – and there are cases that have shocked other parents struggling with VCB, and deterred them from reporting. The consequences of reporting, for the parent and child, may be worse than the problems in hand. I don’t know if these issues were thought about at the conference. I sincerely hope they were.

Thank you for all your comments Clara. This has clearly touched a raw nerve for you and your own experience sounds dreadful beyond words. Sadly I was also unable to attend the conference so I cannot vouch for the direction of the discussions and whether these points were made on the day. However, we should applaud the fact that there were professionals present – and taking part – in strong positions of power and responsibility – who can now themselves work for change. We need to see pressure for change happening from both ends, and to work together in partnership to bring about the positive outcomes we all seek.
I wish you hope for the future.

Can back up everything Clara has said above. There is a shocking parent blame attitude among the vast majority of professionals and what’s even worse is the lies that some professionals will tell in malice against parents seeking to have their children’s needs met. So many special needs parents have fallen victim to malicious referrals by professionals and the evidence is out there if you search. That people are so frightened to report being abused by their children, like living in an abusive relationship that scars them for life, because of the parent-blaming is shocking. They suffer abuse by their child and then abuse of power by professionals.